I am pleased to say that my weekend was truly lovely. I found myself with a friend at the St. Louis Science Center, a magical place I had never visited for all the time I’ve lived in this city. I turned into an enchanted child upon standing in front of the life size animatronic T-Rex you see above, slightly intimidated and half convinced he’d walk right off the platform. Spoiler alert: he didn’t.
Aside from the T-Rex who was distressed due to his embarrassingly tiny arms, the planetarium also won my heart. After all, I am a bit of an astronomy nerd if you can’t tell from my, well, everything. The planetarium had two choices as far as seating; regular chairs placed in tidy rows and mats to lay on the floor wherever we decided. Naturally, we chose to lay beneath the projected stars.
After the show we had to make our exit which meant getting off the ground. I was distracted by my elation and quickly sat up, only to be met with severe nausea, a sudden flood of pain and sickness, and a loss of vision. For only a moment I forgot that I suffer from Orthostatic Hypotension, an aggravating disorder that affects my blood pressure. While it is normal for most people to get a “head rush” when getting up too quickly, for those such as myself, the repercussions are a bit worse.
Orthostatic Hypotension is defined as, according to the Magic Google Machine,
Orthostatic hypotension is a decrease in systolic blood pressure of 20 mm Hg or a decrease in diastolic blood pressure of 10 mm Hg within three minutes of standing when compared with blood pressure from the sitting or supine position.
My systolic blood pressure specifically jumps within 30 ‘points’ as my doctor likes to call them (or MM, which stands for millimeters of mercury) making me an ideal patient. Alone, the condition is only moderately annoying, but combined with my Vasovagal Syncope it becomes dangerous. Both conditions working together sometimes leads to a loss of consciousness. Out of all my illnesses the combination of these two causes me a great deal of stress; I detest the feeling of passing out and the sense of unavoidable doom that ensues, not to mention the jarring hallucinations and overheating, as well as pain that follows the syncope once I wake up.
When I express to others that I have a low blood pressure issue, they often consider me “lucky” though I feel far from it. They don’t comprehend how frustrating it is that am not allowed to take baths or sit in hot tubs (which would be immensely helpful for my pain ridden body), or how trying summers are for me to get through because I have to worry about overheating and fainting.
They also are unaware of how many injuries I’ve gotten from as a result of having Orthostatic Hypotension and Vasovagal Syncope. My concussions, busted lips, bruised arms and legs as well as my Syrinx that was only recently found yet may be with me the rest of my life. I have to attempt to make my room is the perfect temperature every night, because if it is too cold I wake up shaking uncontrollably, while a too hot room can send me to the hospital in the early morning. Oh, and the ungodly amounts of Gatorade I must drink in order to help regulate my blood pressure.
My hypotension also makes it so I cannot take any medicine at all for my anxiety disorder, because any drug that might help my anxiety will only worsen my blood pressure. Likewise, I cannot take any blood pressure medicines without having them aggravate my anxiety and turning me manic. Having a plethora of illnesses at once makes for tricky health maintenance.
Living with several chronic illnesses can be tedious because every little detail in an environment matters. I try my best to be the strongest advocate for my health, and considering all I’ve been diagnosed with, I like to think I’ve done a decent job at finally getting a grasp on how to handle it all. However, getting used to doing things a certain way means that I have more control most days, but not all. Some days I can forget simple steps that end up having negative consequences while other times I am incapable of doing everything I need to do.
It never gets any less frustrating to have to deal with so many little details that can have surprisingly big impacts. Thankfully I did not pass out in the Planetarium, which is a relief considering it would have been embarrassing and would have ruined my day. Overall this past weekend was a reminder than despite my differences and my struggles, I can still have beautiful days, a wonderful life, and am deserving of happiness just as much as any averagely healthy person.
I may have to work a bit harder for it and take a slightly unusual path to find my happiness; but as I live, I realize that I’m more okay with that than I ever have been before, and so I remain passionate in my drive to keep moving forward, even amid the ups and downs.
Get it? Because my blood pressure fluctuates… That was a terrible joke. Sorry.